Does My Other Daughter Have a Brain Tumor, Too?

I never thought I’d hear that three-letter acronym again. “I’m going to order an MRI,” said our pediatrician after performing a routine exam on my younger daughter.

Siblings of children with brain tumors have an increased risk of developing one, themselves. That fact, coupled with one or two not uncommon anomalies, prompted Marissa’s doctor to schedule the MRI to rule out that our second child had a brain tumor, too.

So back we go. Same hospital, same imaging suite as the one we visited most frequently. I am on auto-pilot as I make the 15-minute drive: traversing quiet residential avenues, making a left at the lights toward the park, then right and right again into the same parking lot where I had accompanied Natasha hundreds of times over the years. There were occasions when we’d been in that same parking area and I’d struggled to keep up with Natasha as she’d raced to the elevator — exhibiting the sky-high energy and even higher spirits of a healthy third and fourth-grader who appeared to be “cured” and loving life — and there were those other dark, desperate times when I’d gingerly pushed her in a wheelchair. But in the last couple of years we had almost always walked slowly and steadily, my arm tightly hooked through hers.
Most vital organ

“Look at those dogs running into the wall,” Natasha had remarked in the weeks before her death, as I helped her into the back of the car. “Oh yes, Sweetie, lots of dogs,” I said, not wanting to tell her that her hallucinations were the result of her disease running rampant in the most vital, most complex and least transplantable organ in our body.

“Sorry, there’s going to be at least a two-hour wait. Can I direct you to another MRI center in a different part of the hospital” says the receptionist at the MRI suite.
No directions required. We trundle over to the other imaging center: the one where Natasha had her last ever MRI, the one that revealed “months” was no longer a feasible goal; it would be “weeks” or possibly “days.” Our 12-year-old daughter would almost certainly be outlived by her 90-year-old great-great uncle.

We wait for the nurse. I am concerned that my younger daughter has picked up on our own “scanxiety” from the years of witnessing her parents stress about her older sister’s MRIs, but Marissa is engaged, curious and apparently anxiety-free. She is intrigued by the gown that ties up at the back (“just like Natasha’s!”) and the IV line into which a contrast agent will be injected to help identify any abnormalities in the brain (“cool!”). I tell her that the MRI room is rock-concert noisy but it won’t hurt, that I will be right by her side — that I won’t be allowed to hold her hand, but I will be there to squeeze her foot.

“I’m going to take her to the MRI. You can wait outside in the waiting area if that’s OK with you, Mom,” says the RN.

“I’m coming with her if that’s OK,” I say timorously but firmly as she looks at me with what I interpret as irritation. “I can leave my jewelry and my purse in the locker,” I continue, showing her that I know the drill and probably won’t be easily dissuaded. There is a brief interlude when our eyes lock and I am concerned that my expression resembles that celebrated YouTube phenomenon: “Bitchy Resting Face.”

One hour later, we emerge from the clanging cacophony of the MRI. We hightail it to the hospital cafeteria at Marissa’s insistence. It’s there that I’m overcome by contradictory emotions: I’m sad because it evokes memories of my evening ritual when Natasha was inpatient and I would make a daily dash for a salad and coffee before settling down for the night with her. Yet it brings me a perverse happiness: even during those high-stress, red-alert days, there had been a constant and that was Natasha. She had been alive: I had been able to stroke her hair, talk to her, read to her, admire her delicate hands and kiss her perfect face. (If only I could do that just one more time before I die.) This cafeteria, which was part of our landscape in the times when Natasha was at her most vulnerable, makes me feel closer to the beloved child I have lost. Odd, odd, odd.
Waiting for the phone … again

Back home, it’s time for the white-knuckle wait for a call from one of the doctors from Natasha’s neuro team who had generously agreed to review the scan, so we don’t have to wait for weeks until it has been processed through standard channels.

There is no phone call that night. Probably nothing to worry about, we tell each other. But the next morning I wake up early: both daughters with a brain tumor? Surely not, but I know that it happens. I had scrutinized the medical literature and found a pair of afflicted siblings and Natasha’s neuro-oncologist had heard of another case.

Midmorning my phone rings:
“Could I speak to Mrs. X, please?”
“That’s me. Is this Dr. X?”
“Yes, how are you?”
“I’ll feel better when you’ve told me that Marissa’s MRI is normal.”
“It’s very normal.”
“Well, thank you for letting me know.”
“Of course!”
[I know I have to say this, but can I say it without breaking down?]
“Thank you so much for looking after Natasha over the years. She always liked you and we did, too.”
“Natasha was a delightful child and I just wish there was more that could have been done …”[Pause as I struggle to compose myself. Deep breath.]
“I wish there had been more that could have been done, too. But that first surgery when you removed the tumor gave her nearly three years before her recurrence [breaking down in embarrassing sobs] … and those three years were very happy years and that wouldn’t have happened without your expertise.”
“I am very pleased that they were happy years. Thank you for telling me this.”

I replace the receiver. Done. And now I am off the hook to cry as much as I need, without worrying about putting someone in the awkward position of having to deal with the grief of a mother who will forever miss the child that will always be dead.

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Whew…I didn’t realize it, but I was holding my breathe the entire time I was reading this. The relief must have been overwhelming. I can imagine that you must feel a little like a reset button has been hit after every “embarrassing sob” you have. You need that every once in awhile I would imagine. The build up must be constant and a release is so important. You are handling this with such grace and you honestly inspire me.

I have been following your blog for a while and I wish I had written sooner, but its painful to write to you just as it is painful to read :((( I will say lots of banal things because I honestly don’t even know what to say. Life is so incredibly scary. I don’t understand why things like this happen to people and how to live in the world where things like this do happen…It physically hurts to read about you losing your precious kid. Natasha’s face is just beautiful and absolutely luminous and its obvious that you love her tremendously. I just want to wish you something good. I am not sure what it is because nothing can take away your pain. So i will just say that i hope your Marissa makes you incredibly happy and that she inherits your ability to express yourself through writing and does amazing things in this world. I hope this MRI, Marissa just had is the last scary test for anyone in your family. I am so so sorry for what happened to your child and I just wanted to know that some stranger in Boston is thinking about your family and wishing you good things! Take care.

The last couple of hours have flown by as I spent them reading your moving entries. Your honesty, in mourning, pays beautiful tribute to Natasha in ways beyond what you may realize. Your decision, to allow strangers to accompany you through this, influences and affects- inspiring others to love to its fullest expression just as you have with your girls. Life can get so busy we get distracted from what’s really important. I’m truly sorry for the circumstances that placed you in this role.
My heart aches for Marissa as she grieves the loss of her sister, too.

This is oh so familiar – we went through something similar as well. Losing 1 child to GBM and then the awful anxiety when one of the siblings must have an MRI to rule out yes, a brain tumor. Thankfully like Marissa, our oldest son’s scan came back fine, but I must admit since Joey’s illness, things like sleeping all the time and some of the other symptoms that Joey had before he was diagnosed with a brain tumor create a lot of anxiety.

I’m so glad that Marissa’s MRI came back clear but so sorry that you had cause to worry.